Dementia, a progressive mental deterioration, is a well-known condition with symptoms such as memory loss, confusion and senility. While it mostly affects elderly people, around 5% of dementia sufferers are under 65, mostly between the ages of 40 and 60.

This might sound like a tiny percentage, but it adds up to 42,325 people in the UK who are living with the disease in their early to middle ages, many of whom will have young families. Additionally, it's thought that figure is probably higher because of the difficulties with diagnosing the condition.

Whilst young people experience similar symptoms to older people with dementia, the impact on their lives, and the lives of their loved ones, is far greater. Being told that somebody close to you has an incurable disease is never easy, and it's made so much harder when the condition in question didn't even cross your mind, as is so often the case with early-onset.

For the first time, research by the Alzheimer's Society and Sheffield University is focusing entirely on the impact that a young dementia diagnosis can have on the patient's loved ones – specifically the children of those diagnosed. Pat Sikes, an Alzheimer's society-funded researcher, said:

"There has been very little research into the effects on children and young people who have a parent with dementia, but it is clear that without access to support the toll on their mental and emotional wellbeing can be severe. Our study is unique in its focus and approach and has allowed us to interview in great detail young people aged between six and 31 who have been affected by parental dementia. We know that more needs to be done to support these children and young people to cope both with their emotions following the diagnosis, but also to manage their adjustment to their parent's journey through dementia which, contrary to the common perception that dementia is primarily about memory loss, can involve significant behavioural changes."

While there is no right or wrong way to deal with such a life changing diagnosis, it's important to make sure you're doing it in a way that isn't detrimental to you, or your relationship with the dementia sufferer. Here are some tips that could help you cope in the darkest moments.

Don't forget who they are

If you have a parent, relative or friend who has been diagnosed with early-onset dementia, it can be easy to start seeing their condition as the defining aspect of their identity. It's important, first and foremost, to remember that they are a person – the same person you know and love – and should always be treated as such.

In the period following diagnosis, you're likely to experience feelings of grief and bereavement similar to those experienced after a person's death. It'll be hard, but try and celebrate your loved one's life rather than mourning something that is not yet lost. You can do this by going over all the memories you share together, and by making 'bucket lists' of things to do with them before their condition gets too serious.

Respect their independence for as long as possible

A person with dementia may gradually lose their independence and become more reliant on the care and support of others around them. With early-onset this is often one of the hardest changes to come to terms with for everyone involved (particularly in parent / children relationships), as it is a transfer of care and responsibility that is decades premature, and in many cases the child taking on the role of carer may still be in the formative years of their life.

If you begin feeling angry, frustrated or impatient with your loved one remember that this is a scary time for them too, and think about how you would want to be treated. Try not to 'take-over', but rather think of yourself as a 'back-up brain' for your loved one. Only offer help if they need it, and if they are struggling to remember something suggest key words or offer suggestions of what it might be. This way you both get to keep some independence for a little longer and (if they are your parent) it'll still feel a bit like they are in charge and caring for you, not the other way round.

Alter your communication style

As the condition progresses, your loved one's ability to communicate will deteriorate. They may have problems with finding the right word or following a conversation, or it may be that their medication is making them groggy. Again this is understandably upsetting and frustrating, but try not to let it get the better of you and instead see it just as a slight change to how you'd normally have a conversation.

Always be sure to include someone with early-onset in the conversation

GettySteve Prezant

Start by speaking a bit slower than you're used to. It'll seem weird at first, but it won't take long to become accustomed to, and will make conversations so much easier. Be aware of what tone you use as well, as smooth speech will be easier to understand and will keep everyone calm. If your loved one starts using body language more, try and do the same thing, and maintain eye contact to allow your loved one to focus on you whilst maximising concentration.

Most importantly, be sure to include them in conversations no matter how tough it might seem. The more included they feel, the more effort they'll make to keep track of things and this will help maintain cognitive function for longer. Try not to speak on their behalf, complete sentences for them or allow others to exclude them: remember that you should be allowing them independence for as long as possible.

Ask for help

It's understandable that you want to be there for your loved one every step of the way, but you shouldn't have to shoulder the burden of caring for someone alone. Don't be embarrassed if you feel it all gets a bit much and you have to ask for help – if you try and continue struggling along by yourself, both your loved one's and your own health could suffer.

As the dementia progresses, there'll be fewer opportunities to share meaningful activities and it'll get to the point where you'll have to consider getting professional medical help for your loved one. This will perhaps be one of the most upsetting times in the dementia journey for you, but it's vital that you stay as realistic as possible otherwise your mental wellbeing will take a hit. Plan ahead for this, setting yourself a personal guide for when you'll ask for help so that when it happens it isn't too unexpected.

Remember 'you-time'

This is particularly important for children who have to cope with a parent who is suffering from early-onset, says Pat:

"Although the parent with dementia is still present within the family, they may be unable to share meaningful occasions or traditions such as graduations, birthdays or weddings, which can be incredibly painful. The uncertainty around their parent's condition can mean that the son or daughter may feel they must put their life on hold, forgoing important decisions about their future as they go through the changes and challenges that dementia presents."

Life doesn't have to stop when dementia starts. Don't feel guilty about putting yourself first every once in a while. This might be something as small as going out with your friends every once in a while, or pursuing a future away from caring for your loved one. This will help keep your mental health on-track and means you won't lose touch with what's it's like to be young, healthy and happy.

This year's Dementia Awareness Week (15-21 May) is about encouraging people to confront dementia head on, be aware that you can do something about your worries and come to Alzheimer's Society for help and support.
We want people to know that Alzheimer's Society is here for anyone affected by dementia and there are lots of ways we can help you. Call our National Dementia Helpline on 0300 222 1122 or visit our website.

The materials in this web site are in no way intended to replace the professional medical care, advice, diagnosis or treatment of a doctor. The web site does not have answers to all problems. Answers to specific problems may not apply to everyone. If you notice medical symptoms or feel ill, you should consult your doctor - for further information see our Terms and conditions.

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